Tuesday, April 30, 2013

The Hardest Things

Some things are just going to be hard. You can't find a way to circumvent them, or fix them, or ignore them. You can't switch them for other, less hard things.

For me, one of those hard things (and let me be clear, there are a crap load of them in my life right now) is Benjy's relentless pleas for animals.

And I totally deserve it, because what goes around comes around, and I drove my parents CRAZY asking for all kinds of improbable creatures when I was his age (and younger and older).

But when I asked for a Capuchin monkey, for example, or a dolphin for the bathtub (hey, we had two of them, one could have become a dolphin habitat if my parents hadn't been so damned unreasonable), I could hear my parents when they said no. I could understand them. Sometimes they gave me a reason and sometimes they did not, but either way I dwelt in my animal-fever for a couple of weeks, dreamed of lemurs or horses or dogs that were not coming my way (OK, the horse did, briefly) and then moved on.

The lack of furred or finned or feathered people in our house (OK, I DID have a cat, a few rodents, maybe a fish or a hermit crab, but STILL) did not throw me into an emotional abyss.

Weren't my parents lucky?

I always know when Benjy is falling into the abyss because creatures of the invertebrate or quadrupedal or avian persuasion  make their appearance into our world.

Not a corporeal appearance, although that was once the case. But man do we talk about them

Our conversations go something like this:

Benjy: Mom, I'm so sad. I'm lonely. If only I could have a lizard/bird/fish I would be OK.

Me: I am not buying any more animals. You did not take care of the fish or the hermit crabs. You lost interest within a week. And I have more and more creatures to take care of. Can you imagine if I bought you a bird? You know I have a terrible wing phobia. [This happens to be true. I'm shuddering just thinking about it.]

Benjy (in a low, low voice): A lizard'/bird/fish would be my friend. I don't have any friends. Why won't you help me? Don't you love me?"

Me: My Darling, a lizard/bird/fish would not love you back. I promise."

The flush on that's boy's cheeks when he hears no, the utter defeat in his posture, his slow and weighted steps back to his bedroom, kill me. That stuff breaks my heart. And his words cut me.

I walk around most days with a thousand knife wounds to my tenderest parts. It hurts like hell.

And I do wonder. AM I heartless? WOULD he get better if I got him a bird, or a gecko? But I don't wonder too much, because I was not born yesterday.

I bought the tropical fish with high hopes he WOULD find solace in watching them swim. (That lasted about two days. And then he realized that cleaning a fish tank and  removing their little slimy corpses to the toilet when they died was kind of gross. So guess who had to do it?)

I bought the rockin' hermit crabs, overcame my fascinated dread and actually became fond of the crusty little guys. But Benjy does not notice them anymore. If it were not for me they would have died of thirst long ago.

I try to remind him that this buying of animals to fill the aching hole within him DOES NOT WORK. But he never believes me.

This time, he pleads, it will be different.

You know what? If I could buy him a couple of zebra finches and erase what's hard I would do it in a heartbeat. I'd be on my way to the pet store NOW. I would be laughing and crying and thanking all the deities I don't believe in (i.e. all of them) and drinking champagne and waltzing around the house with Lars and Benjy and giggling with Saskia.

I would really like to fix this problem in our lives. Fuck bipolar disorder with secondary psychosis or psychotic disorder with mood lability or whatever has claimed my boy. Fuck  generalized anxiety and panic and Tourette's. Fuck Asperger's. You are nasty and tenacious and inscrutable and brutish.

I hate you all. You are those hardest things that can't be fixed. That flush of despondency and posture of surrender I always see when I tell Ben he cannot have more animals -- that it would be unethical and unkind and futile anyway to yield to that pull -- hurt like I hope most of you will never know, Readers.

I mean that.

But I want to end this post on a happy note. We have some amazing supports now, even more than we did before, thanks to the Commonwealth of Massachusetts and its programs for people with mental health issues. There is going to be a lot more I can do for Ben, and I will have a lot of help doing it.

When that reality hit me today I cried.

I think what that means is that there is a smidgen of hope that the hardest things may get a little bit easier someday.

Sunday, April 28, 2013

I Want One Of These...

pygmy marmoset

But one of these would be equally acceptable:


I don't know if it's the marm or what. But Mother's Day is coming up. So is Benjy's birthday, and he would totally share. Just saying. ;)

It Has To Be Said

One last thing and I will let you go about your business. (I promise it's not going to make you cry.)

Somehow I was lucky enough to snag the Coolest. Dad. Ever. He sends me the best flash mob videos on the Interwebz. He encourages me when I feel like I am going to lose my mind amidst all the crap we deal with around here by saying things like "If you are going to eat an elephant, you have to do it one bite at a time."

Damn, that's good.

And don't even get me going on my Mom. You though the hermit crabs who live here rocked? (You did, because I have told you so many times. I am terribly immodest about the invertebrate members of this family.) Well, the grandmother of my children defies description, in the Best Possible of Ways.

I kid you not. I won't go into detail here because it's one thing to brag about your invertebrates and quite another to brag about your mother (or your children, although I might occasionally succumb to that impulse).

I apologize if this post is a non-sequitur. (It is, it is.) But some things just have to be said.

You Will Love This!

Brought to you courtesy of Dad. Thanks, Dad!

[The slogan 'Our Heroes are Back' is used to announce that, after an absence of one decade, all major pieces in the Rijksmuseum's collection are back where they belong. This is what happens when they suddenly emerge in an unsuspecting shopping mall somewhere in The Netherlands. With the support of main sponsor ING, entrance to the museum is free on the 13th of April from 12:00 to 00:00.

This Flashmob recreates Rembrandt's Night Watch. It's considered one of the most famous paintings in the world.]

I have stood in front of "Night Watch" in the  Rijksmuseum in Amsterdam. It was an experience I will never forget.

And here is how they did it (if you don't speak Dutch you will have to just enjoy the visuals -- and the wonderful sounds of the language):

Now go and have a nice day.

Saturday, April 27, 2013

How The Hell Am I Going To Write This Post?

This one will require bullets (of the punctuational kind, of course). Words like these hurt less when they are orderly and tight and less like a flood surge than they would like to be.**

** So much for the orderly and tight bullets.


  • Was doing so much better emotionally until last Tuesday. But his cognitive and memory losses continue, maybe worsen.
  • Engaged me in a (slightly confused) conversation about the ugly Westboro Baptist Church, Louis Theroux, and freedom of speech in America and Germany, on our Monday ride to MGH. Almost like the old Benjy.
  •  Tuesday he could not lift his head and face the world. Wild despair all day long. A few tepid upward swings to a place of resignation.
  • Tuesday evening Lars and I took him (yet again) to MGH, where he was presented to the monthly neurology conference because he is an "interesting" (and perplexing) case. We hoped this would get him some help.
  • Tuesday evening a twelve-year-old boy (thirteen in a little over a week!) became a profile in courage. He allowed himself to be made vulnerable in front of a room full of neurologists he did not know (except for one). It was excruciating for me to watch. I can only imagine how it felt to him, because his brain no longer works the way it should and he knows this. So did everyone in that room.
  •  Wednesday the despair waxed large and thick and deep. All week school was an agony. And why wouldn't it be?
  • Thursday morning he could not name the furniture in his bedroom. I asked him to get something off his night table, and he asked if that was the thing with his computer on it. When I said that was his desk, he wondered if the night table, then, was that thing with all the drawers. I informed him that was his dresser, and he could not invoke the process of elimination to identify his night table so I had to describe its color and what sat upon its surface. Then he knew.
  • Thursday after school he told me he does not want to live the life he is living. That he does not want to live in this world at all. I have heard this many times before, but not in the past eighteen months. I am afraid to kill myself, he confessed, but I want a break from this life.
  • Thursday evening he asked to go back to the hospital. I called his psychiatrist and she deferred to my judgment. I am an old pro at this now, and know when he needs it and just how to make it happen. We decided to give it another day and then make a decision.
  • Thursday evening his neurologist called to discuss the findings of the conference. They are certain he does not have a degenerative brain disease. Non of those prion horrors I urged you not to Google in a recent post. Thank. You. World.
  • However, here is what they think. My boy is so very mentally ill -- there is so MUCH dysfunction for his poor brain to deal with, that his brain is partially shutting down. Sort of a short-circuiting kind of thing. Because who has room for memory and word recall and other basic cognitive functions when they are swollen to bursting with anxiety and despair and mania and psychosis and all those other rogue impulses?
  • I did not tell Benjy this. I told some other people. And like I do all the time now (see below), I wept.
  • Friday morning the sun rose intensely. Benjy faced it. He sat in front of his SAD light and ate his waffle and got himself together (with a lot of help from me) and grabbed his tennis racket and went off to school. Small step, huge triumph
  • Friday afternoon he came home from school and did not collapse. He had an invitation from a friend for Saturday. He had something to look forward to.
  • Friday evening the MOST ASTONISHING THING happened. His sweet friend, L (another Aspie, but FAR less impaired than Benjy and a public school student here in town) invited Benjy to attend the middle school dance with him. Ben called me up to his room and informed me he was going.
  • My heart stopped. I think you will know why.
  • Um, I said, do you really think this is a good idea? There will be loud music. Flashing lights. Darkness and crowds and probably some mean kids and possibly some illicit behaviors. (And so much worse, I was convinced.)
  • I texted Saskia, who was at a party. "He's going to the dance with L!!!! I can't dissuade him!!!!"
  • Saskia texted back. "That will not end well. I could barely function at those things. If I come home and hang out with him will he change his mind?"
  • He would not. I was beyond terrified, If you have read this blog for a while you will know why. But he wanted the chance to be regular kid for once, and I had to let him do it.
  • Saskia instructed me on how he should dress. "Do NOT dress him up!" (Duh.) Make sure his pants fit. Clean shirt. Deodorant. Do we have any cologne?"
  • Oh, Geez.
  • "OK then, use a little of Dad's aftershave. Just a little."
  • That made me laugh. When I suggested it to Ben he was afraid it might poison him if he licked his cheek. I assured him it wouldn't. I couldn't find it anyway (Lars? Where the heck do you KEEP that stuff?) and his Axe deodorant (which he NEVER wears as far as I can tell) made him smell good.
  • He asked me if we could buy an Orabrush so he could brush his tongue and avoid bad breath. "90% of bad-breath germs are located on the tongue" he told me.
  • Oh, Geez.
  • And then, Readers, after making sure he looked fine, and picking up Saskia and her best friend so THEY could check him out and also instruct him on what to do and what not to do, Lars and I picked up his friend L and drove the two of them to the dance. He stared at the giggling, joking, CONFIDENT middle school girls infesting the front of the school and took on a decided deer-in-headlights look. Then he drew a deep breath and followed L out of the car.
  • "Drive away, Lars," I said. "Quick. And don't look." I simply could not watch him walk into that school, my beautiful boy with his over-medicated gait, his glazed but lovely green eyes.
  • He lasted an hour. YES!!!! And it was fine, apparently. Then he and L went back to L's house and killed zombies (virtually, folks, virtually) for another hour.
  • Everyone went to bed happy. It has been a loooong time since that has happened.

Your patience is wearing thin so I'll make this short.

  • Sick on and off since November.
  • Really REALLY sick starting last Friday. Severe musculo-skeletal pain, insomnia (up for good every night until Tuesday night by 3 a.m. because it just hurt too damn much to lie in my bed), headache, fiery (but not swollen) glands, fatigue, unsteadiness. 
  • Monday I went to the doctor. "Yep," she said, "something is not right here." She ordered a battery of blood tests.
  • I spent WAAAY too much time on WebMD.
  • Diagnosed myself with either fibromyalgia, MS, Sjogren's disorder or some other autoimmune disease. And in my darkest moments, the cancer I have feared ever since my sister died of it in 1996.
  • Tuesday I developed some scary neurological symptoms. Scary.
  • Learned I do not have cancer but I do have a serious vitamin B12 deficiency. Believe it or not that can make you REALLY sick. Luckily mine was caught before my face was paralyzed. I am not joking.
  • Started high-dose supplements. Slept through the night Tuesday.
  • Feeling MUCH better as I write this.
  • But Readers, I learned that B12 deficiency can cause depression and personality changes. i think the entire world but me had noticed I was depressed and bitchy (not my usual way of being). I realized I WAS depressed and bitchy when started crying three or four times a day, and when I thought back to my interactions with people over the past month.
  • (Thank god I still have friends.)
And now, Readers, I have to work on me as well as Benjy.  I am learning how to take care of myself. It's not easy for me. The hardest thing about this life we are living is that we do not know, from one day to the next, what is going to happen. From one HOUR to the next sometimes. But I finally emerged from my hole and told my friends what's been happening over the past weeks, and my friends are coming to the rescue.

We may not have much money (understatement of the year) or luck (bigger understatement), but we super-rich in family and friends. We are the one-percent in that most important area...and I would not trade that for anything.

The only trade I would make is for my son. For his happiness and health, for the gift of not having to simply agree with him when he tells me life is not fair, for a break from the anguish of watching my child suffer (and for a break for HIM from that suffering) I would trade almost anything. My left hand (that's the important one). My eyes. My legs. Whatever.

But today is another sunny day. L is coming here to hang with Benjy today, and later we are going to my brother and sister-in-law's for a cookout. So it is shaping up to be a good one.


Monday, April 15, 2013

Tragedy in My Beloved Boston

Just as I was finishing the last post Benjy came downstairs to tell  me his friend's mom said there had been an explosion at the Boston Marathon. Saskia and I looked at each other and shook our heads. You know how messages get garbled in transmission. We figured someone got their wires crossed somewhere along the line.

It turned out Benjy's friend was right. Two bombs at the finish line, at least two people dead, scores more hurt. All those people, all that pain and loss, in my beautiful city. I really did not think it would happen.

The bombs went off around 3 pm, when the greatest number of runners were coming through the finish. At 3 pm, Benjy and I were supposed to be on our way to Mass General for his psychiatry appointment. Normally I drive him through the city to avoid the highway, which scares him. We would have been right near that finish line, except of course you can't drive there on Marathon Monday.

As it turns out we canceled the appointment. I couldn't get Ben's buy-in on taking the Mass Pike. If we had gone through with it, I am not sure we'd even have gotten there, as part of our journey would have been along Storrow Drive, which hugs the Charles River, and which passes fairly close by Copley Square, which is where the bombs were detonated. Even if we'd made it, Mass General would have been CHAOS, as that's where a lot of the injured have been taken.

Wow. Today is a darker day than I thought. Sure, we've got sun, but in Copley Square they had two huge plumes of smoke and dust. It rained glass. People lost lives and limbs.

Benjy and I are fine, physically, at least, and I am grateful for that. But I am sadder, in a general kind of way, than I've been in a long time.

I am sending healing thoughts to all those who suffered fear, pain, and loss today in my beautiful city. Today it was a City of Nightmares.

Little Darlin', It's Been a Long, Cold, Lonely Winter...

I think spring is finally here.

Benjy found some crocuses in our yard last week. Brave little pale-purple blossoms, poked out of the cold ground. That was one thing.

We have been waking to bird-song. That is another.

The sun is beaming today, a great big solar grin. That makes for a good day around here.

I hope the winter is behind us. That was a bad winter for this boy and his mother. A winter of hospitals and scary medical tests and scary symptoms like memory loss and loss of things he once knew. Things he learned in kindergarten.

That was a winter of other losses. Losses of friends and bodily control and dignity.

It was also a winter of gains, but not good ones. Weight gain, for example (hello, Abilify!).

But the sun is here, and so is a new medication, Lamictal, that seems to help. He has not developed a fatal rash, and he has not succumbed to despair. We've seen no mania in the past couple of weeks. Overall, he seems brighter. Like the enormous weight he has carried on his back for so many years has lightened just a bit.

He still has his obsessions. Right now it's tennis and basketball. That alone is something to celebrate: it's not video games, not guns, not paintball or bows and arrows.

The sun is coming, but it's not all better. His memory does not really work. In the space of two hours he completely forgot an encounter he had with the school nurse last week, which included a physical exam. Two hours later he simply could not recall meeting with her, in spite of the fact that they conversed about which ankle was giving him trouble and the bite marks on his lip.

He is still having urinary accidents. (We have an appointment with urology next week.)

According to his recent neuropsychological evaluation he has lost skills, lost knowledge. His functionality is not terribly good.

Right now, the primary task at hand is to determine whether the mild psychotic symptoms he's having are secondary to bipolar disorder (yes, severe depression can cause psychosis) or a primary psychiatric illness (as in, early stages of schizophrenia). We are hoping beyond hope it's the former. That would be the less shitty of the two options.

Oh, and his neurologist is still on the case. Just in case there is some rare neurological issue she's overlooked. (I guess that memory loss last week freaked her out. I know it freaked me out.) So next week she is presenting him at some sort of conference of all her neurology colleagues at MGH. I'll have to trot him out to be poked and prodded (metaphorically, at least) in front of the whole department, and then they will discuss the case (without us present, thank goodness!).

I know this will be a hard thing for him. I only agreed to it because we are desperate for answers, and this seems the best way to get some. If the doctors at Mass General can't figure this out, then who the hell can?

So there it is. I'm trying to hang onto the good stuff. He's happier than I've seen him in a long while. I think the new med is going to help, and he's getting a dose increase tomorrow.

Little Darlin', here comes the sun.

Saturday, April 13, 2013

Friday, April 12, 2013

For Megan

Tasmanian Devil, a la Warner Bros.

I Googled the real thing. They look rather snarly and vicious, so this guy might be true to the spirit, if not the letter. ;)

Small Pleasures

It's been so long since I've blogged I've almost forgotten how to blog (not really). I don't know why I've been away. I guess I am feeling very FULL right now. Full of emotion, of stress, and of this shimmery, effusive love for the pieces of my life that fit. My kids. Lars. My parents, my brother and sister-in-law. My nieces and nephews. My writing. My friends.

I promised I would tell you about the results of the neuropsych. I will, but not now. Right now I am sitting with my boy on the no-longer-butterscotch-colored couch, watching Family Guy. (I know, Mother of the Year, right here. Thank god all the jokes go right over his adorable Aspergian head.) He is eating the Steakums sandwich I just made him. (Is that stuff even FOOD? It's his new thing.)

And I am just feeling happy to have him with me. Grateful for small pleasures. I don't take anything for granted anymore.

You know what else I am grateful for? You guys. The people who read this blog. Who sometimes reach out and let me know you're there. And who sometimes don't, but I can feel you there, anyway. You probably don't know what that means to me, that you have our backs. It is an indescribable feeling. It is wonderful.

Thank you. And now back to our incredibly vulgar television programming.


Tuesday, April 2, 2013

Big Day

We're meeting with the neuropsychologist today, to go over her report. I'll let you know what we hear.

I have been frozen in place, metaphorically speaking -- unable to write anything. Everything else is getting done by some automaton who looks like me, but it's getting done.

This mental illness thing is Too. Fucking. Hard. Especially because it's my kid.

But I do have good news to share: our Saskia was accepted into a very competitive summer opera program run out of the Walnut Hill School for the Arts. (I wish she would let me post her audition tapes but she would kill me. Maybe even literally.)

She'll be studying, and of course performing, opera at the school -- and for seven days in Italy! I was determined to make it happen if she got in...because it is not likely we will be able to give her the experience of travel anytime soon, if at all. I wrangled her some good financial aid, and her amazing grandparents came to the rescue -- once again. Between those sources, my money from O Magazine (whenever that piece comes out -- don't know yet), and Saskia's left-over Bat Mitzvah money, we will be able to do this.


And that is all for now. The Hellacious Hound is gazing imploringly in my face. I think it's time for a walk.

Auf Wiedersehen, Readers!